06 May 2012 ~ 8 Comments

The Divining Dragonfly: My Journey with Autism (Part 3), by Cindy Caprio

You can read Part 2 of this article here

I began and completed part 3 of my five-part column in April, Autism Awareness month. This is about my son and our ups and downs with him having autism.

My boy turned three in February. It was during this time he was making the transition from Early Intervention Services into a Special Needs and Inclusive Pre-School. This is a school that is mostly made up of children with delayed development, but also accepts a certain number of kids without development problems to act as role models to the children with special needs.

Although TLC was diagnosed with PDD-NOS (Pervasive developmental disorder not otherwise specified, one of the three Autism Spectrum Disorders) it still took a lot of perseverance to get him into this school. More tests, observations, meetings with the staff at this school and having to gather all the information needed from the pediatrician, his behavioral therapist, and Early Intervention.

Having all the facts and recommendations in writing was crucial in helping us to get him enrolled in this school. The wording and professional jargon was very difficult to understand, but luckily for us his EIS (Early Intervention Services) Coordinator came with my husband and myself to support us.

An IEP (Individualized Education Plan) meeting, particularly your first one, can be quite intimidating. Make sure you do your homework and prepare to become an advocate for your child. I was confident TLC would qualify and get services from the school, but all the stress leading up to the meeting sometimes led to self-doubt. Luckily for us, the meeting went a lot smoother than anticipated and they offered us several services.

TLC had a lot of things that needed to be addressed: speech (receptive and expressive – i.e. what he understands versus what he says); self-regulation (i.e. the ability to control environment or state of mind); low tone (due to his weak core and weak muscles, as well as a very “flippy/floppy” left side that is related to the low tone); possibly neurological anxiety; frustration; upset in changes to his environment and transitions; sensitivity to sound, light, crowded places and general sensory overload. TLC has poor Gross Motor Skills (i.e. the abilities usually acquired during infancy and early childhood as part of a child’s motor development); his body posture is weak due to his low tone; he walks on tip toes, which is common with kids on the Autism Spectrum, as is walking stairs one step at a time instead of a regular stair-walking motion which he still does. His play skills were at a very immature level and he did not know how to socialize with his peers and instead tended to play with grown-ups.

Entering school that winter, TLC knew some words but they were sporadic and unintelligible and communication was still difficult. I was so nervous sending my little man off to a school; we had such a bond with us staying at home together and with the second year of him and I attending all the EIS (Early Intervention Services) it was something the two of us had gotten very used to. This was it. He was off to the hands of strangers, the small white public school van came and picked him up and off he went. Everything seemed out of my hands. I cried – they were tears of happiness because I knew this was the beginning of a fabulous journey for him and our family.

He adapted to school quite well, most likely because he thrived on routine and structure. Routine and structure seems to be a common thread amongst kids and adults with an ASD (Autism Spectrum Disorder).

From February to June, we saw so many amazing things happening before our eyes – not so amazing to people with “typical” kids, but for us they were leaps and bounds! It made us realize how lucky we were to have gotten TLC into Early Intervention Services and transitioned him into this school when we did.

For the first time at the age of 3½, we heard him say “mommy” and “daddy” clearly without mumbling. He was struggling to say his own name; he was responding to his name but just couldn’t say it, so they taught him some sign language which helped. They started working with him by putting his hand on his chest and saying “me”. Then eventually, with a lot of therapy, it turned into “me TLC”, and finally they helped him drop the “me” and the hand to the chest so he was able to say his own name – that to me was the most amazing thing because he had struggled so hard to do this. Imagine being a child or an adult and someone asks your name and you can’t get the words out. How frustrating that must feel! Frustration and agitation is another part of autism and I think it’s because of the emotions these children and adults are unable to express verbally and sometimes on an emotional level. Again, I am not an expert, just a mom talking about my own experiences and the knowledge I have gained along the way in my journey with my son and his struggles.

Springtime was coming and one of the most awesome things happened – TLC went on a swing in the playground and LOVED it. That was thanks to the Sensory Integration they did with him during his therapy. Sensory Integration helps children get used to certain sounds and movements that bother them. They did it! Those therapists helped him adapt to the swinging motion! He had hated swinging since he was a baby; didn’t like to be rocked, going in a bouncy chair or even the baby swing. I had tears streaming down my face as I watched him giggle way up high, trying to reach the sky with his little feet. He was also learning to roll a ball back and forth due to his work in Physical Therapy. He never even knew what to do with a ball before attending this school.

At the end of the school year, we were really pleased with his progress. Although most of his words were still unintelligible, he also had a lot of words that we could understand. He had made progress with his Sensory Processing Disorders, but he still had a lot more to work on. We were pleased with his Occupational and Physical Therapy, but he was still about two years delayed in these areas. We had another IEP (Individualized Education Plan) meeting in June, and the team of specialists and teachers agreed that my son TLC qualified for a part-time morning summer program with the school system and that he could return in the fall. This was music to our ears!

Sending your child with an Autism Spectrum Disorder to a special summer program with the school (if it’s available to you) is so important for many reasons. First of all, it keeps them in a routine, structured environment. It helps them not to regress regarding speech, socialization, gross motor, and fine motor skills. It’s also good for helping them to learn independence and confidence.

This was a busy summer for both of us. At this time I chose to start working as a pre-school teacher in a corporate, highly structured and academically strong day care/learning center. My main reason for taking this position was for the love of children, and to get my son enrolled into the same center with me. My goal was to get him as involved as possible in between both summer school and the learning center. I took a huge pay cut and most of my money went towards his tuition at the center I worked at since we didn’t get much of a discount. But I made a sacrifice to help him become the best TLC he could be. I was so excited for both of us. I in a position I loved to work; my son enjoying his experiences at both school and the center.

I also had him in Physical Therapy and Speech Therapy two to three times a week after work. He did not like going and would fight me every time, which was so hard for me to deal with, but I got it into my mind that he had to do this. After all, if I didn’t help him now, the “three-year window of opportunity” would be over.

8 Responses to “The Divining Dragonfly: My Journey with Autism (Part 3), by Cindy Caprio”

  1. lee 6 May 2012 at 3:51 pm Permalink

    I am reading a lot on neurogenesis and autism is finding hope with cold water swimming. It creates oxytocin and neurogenisis. Better than taking it, I would think. I wish you didn’t have to fight so hard for his help.

    • Cindy 6 May 2012 at 9:15 pm Permalink

      Hi Lee,

      I have not read about Neurogenesis and Autism – something I will definitely look into. Feel free to share any links you may have these findings.

      Unfortunately most parents have to fight hard to advocate for their Autistic Children, however, on the other side of this it has made me a much stronger mom and has taught me a lot about my child and Autism.

      Thank you for your comment

  2. Melissa Webster 6 May 2012 at 7:00 pm Permalink

    My Goodness Cindy! This Story is going to help so many Mom’s out there~ your Story has taught me so much about Autism-You are an amazing strong woman !!! There are so many people out in the world who really dont understand Autism ~ this is going to help a lot of new parents should they feel something is not right with their child !Having a Child who has Epilepsy i know how overwhelming it can be and how you need to learn everything ~ God Bless you and Your Family Cindy ! You and your family are always in my prayers
    Thank you so much for sharing

  3. Cindy 6 May 2012 at 9:31 pm Permalink

    Hi Melissa,

    Thank you so much for your wonderful comments!

    I am doing this 5 part column in hopes to help other parents learn how to see the red flags and to help them find the strength to advocate for their child.

    A lot of parents are not aware of the 3 year window of opportunity regarding Early Intervention and getting as many services in place as you can in that time period. This is why I stress so much to get your child evaluated as soon as possible.

    TLC has made me a much more patient, understanding, knowledgable and strong mom.

    I am sure you have learned a lot in some similiar ways having a child with epilepsy.

    Thank you so much for your comment as I am so humbled that my story has moved you the way it did.

    God Bless,

    Cindy

  4. Lori 6 May 2012 at 11:17 pm Permalink

    That school did a wonderful job. He really progressed there. I remember how proud he was of his accomplishments when I went to the events at his school. I’ve been very impressed with the school system there, which certainly makes things less stressful when you don’t have to fight for services. You’re doing an awesome job! I’m sure these articles will be helpful for parents just starting out in the uncharted territory of early intervention and the autism spectrum.

    • Cin 9 May 2012 at 9:16 am Permalink

      Lori, thank you – I am so happy that we found out about the school it was the best thing that happened to him. He was such a little guy when he started only 3, I will never forget the first day when the little white school bus van picked him up – I had tears in my eyes it was happiness, and fear all rolled up into one ball. He has done a great job and as you know I truly believe in EIS as soon as possible. He has come far, but now as he’s growing older new issues are arising. That being said, again, as a parent I am making sure I advocate for my child. When your child is on an IEP it doesn’t matter, as a parent it’s your duty to call the school and talk with the team members to find out how your child is doing. They will not call you!!!! Some children slip through the cracks because there are so many children on IEP’s. Unfortunately the only feedback you will get if you don’t stay involved are phone calls from the principals office. So yes Lori – I am very passionate and very involved with TLC’s progress – as I hope to help uncharted territory of parents just starting out with this. Thank you so much for your comment. xx

  5. Julie 3 July 2012 at 10:13 am Permalink

    Your memory of everything you and Thomas have gone through is amazing – there is so much information that one has to process – it can be mind boggling. Everyday is a celebration with little leaps and bounds with our little ones. The more information we share with each other, the more we can untangle the webs we are all crawling through. Again, your recall and candidness is invaluable to all.


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